One night a few years ago, I watched a young man die over the course of 12 long hours because he refused a relatively common and safe medical intervention.
I remember he was in his 30s and had come into the hospital a few days before with burns on his chest from collapsing onto a hot stove in his kitchen. The doctors in the emergency department realized why he had fallen — his heart rate was dangerously low. Though he had been relatively healthy until this point, he had an autoimmune disease that had caused the electrical signals of the heart to become blocked. A pacemaker can solve the problem; without one, it can be fatal.
But he did not want a pacemaker. His doctors called the psychiatrists to come see him, as we do when people are making decisions that don’t make sense to us. But he clearly understood the consequences. He articulated to everyone who asked that although he did not want to die, he would prefer death to a pacemaker’s potential complications, especially the possibility of infection. Importantly, the psychiatrists also unearthed a history of refusing medical interventions; this was not an arbitrary position, but part of a longstanding value system of sorts.
Each time a new doctor challenged the patient’s decision, he grew angrier and more withdrawn. When his heart rate dropped even further, he was transferred to the intensive care unit where I work and it became my turn to try to convince him.
Patients whose medical beliefs and choices feel incomprehensible, even infuriating, to us clinicians are some of the hardest to care for. But this situation felt especially heightened. If I could not change my patient’s mind, then he would die. He might not even make it through the night.
When I entered his room for the first time, he told me to leave, but part of me was sure my team would change his mind. A cardiologist spent hours at his bedside, trying to get to know him, trying to find some opening that would persuade him to rethink things. My intern called a relative, who said the patient had always made his own decisions — and this felt no different. He had a wife once, but they were estranged. There was no one else to call.
As the sleepless night wore on, my patient’s temper began to fray. He was tired. He was hungry. But we kept him from eating in case he ended up agreeing to an emergency procedure to place a pacemaker (the patient must have an empty stomach). As his heart slowed he grew nauseous, sweaty and unsettled. At one point, I entered his room to try to give him a second IV line of medication, which he refused. As we were talking, he vomited all over me. He apologized to me for that. When I remembered that apology later, it made me tear up. I told him it was OK, that he didn’t need to worry. I could get new scrubs.
The sun was rising by the time the cardiologist left the room, this time with a smile. He was close. My patient wanted a little more time to think, and we could be hopeful.
But just after my shift ended, the team asked him again about a pacemaker. He said no. His heart slowed and then stopped completely. He gasped. Someone ran to get the code cart, but he had said he did not want to be resuscitated. A nurse at the bedside called for morphine. After everything, he did not need to suffer at the end. They managed to give it just before he died.
I felt sick with guilt when I learned what happened. I had spent 12 hours with this man. What could I have done differently? What words could I have used? My patient’s opinions were mystifying, as if the product of an unsound mind. Should we have disregarded them and performed a procedure against his wishes?
It has been a few years since that night, and I have been thinking about it in recent months: Doctors like myself see people make medical choices that feel impossible to understand, like deciding not to vaccinate their children. I increasingly find myself wondering about my role as a doctor for patients who I believe are making bad choices.
My patient had been clear. He was consistent. He had the right to make his own decisions. What I considered to be an unfounded and ultimately disastrous objection to a pacemaker was not, in and of itself, proof of incapacity. And there was so much about him I did not know. I did not know what it was like to live with his autoimmune disease, or what had informed his position about the pacemaker and about medical interventions more broadly. Maybe if I had known him for longer, I could have shifted his position. But maybe that, too, is a self-aggrandizing fantasy, as unrealistic as my idea that night that I could be the one to change his mind.
That night, my job was to make sure he understood the medical realities and consequences and to support him in whatever he decided. That is perhaps the hardest thing that we do: We can’t react with anger or abandon patients who do things we believe to be wrong. This is especially true when their choice harms no one but the patients themselves. We can keep trying, but a medical system must respect autonomy. We can instead consider how the many touch points people have with medicine throughout the course of their lives shape their views and ultimately their trust in us.
Because I was unwilling to accept my patient’s desires at the end of his life, his final 12 hours on this earth were fraught and contentious. I could not have changed his mind, but perhaps I could have changed that.
Daniela J. Lamas, a contributing Opinion writer, is a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston.
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